Kinless Older Adults With Dementia: Qualitative Analysis of Data From the Adult Changes in Thought Study

Abstract

Objectives To examine the circumstances and needs of older adults who were “kinless,” defined as having no living spouse or children, when they developed dementia. Methods We conducted a secondary analysis of information from the Adult Changes in Thought (ACT) Study. Among 848 participants diagnosed with dementia between 1992 and 2016, we identified 64 who had no living spouse or child at dementia onset. We then conducted a qualitative analysis of administrative documents pertaining to these participants: handwritten comments recorded after each study visit, and medical history documents containing clinical chart notes from participants’ medical records. Results In this community dwelling cohort of older adults diagnosed with dementia, 8.4% were kinless at dementia onset. Participants in this sample had an average age of 87 years old, half lived alone, and one-third lived with unrelated persons. Through inductive content analysis we identified four themes that describe their circumstances and needs: 1) life trajectories, 2) caregiving resources, 3) care needs and gaps, and 4) turning points in caregiving arrangements. Discussion Our qualitative analysis reveals that the life trajectories that led members of the analytic cohort to be kinless at dementia onset were quite varied. This research highlights the importance of non-family caregivers, and participants’ own roles as caregivers. Our findings suggest that providers and health systems may need to work with other parties to directly provide dementia caregiving support rather than rely on family, and address factors such as neighborhood affordability that particularly affect older adults who have limited family support.

Why Gerontology Needs Anthropology: Toward an Applied Anthropological Gerontology

“…As the above examples show, anthropological perspectives can also be leveraged in gerontology to improve robust integration of culture into aging research. However, aside from these and other notable examples such as the work of Sharon Kaufman ( Kaufman 1986 , 1995 , 1997 ), Robert Rubenstein (see Clark-Shirley et al 2020 ; Rubinstein 1992 , 2012 ), Janelle Taylor ( O’Hare et al 2022 ; Taylor et al 2023 ; Vig et al 2017 ), and others, it is less clear the degree to which anthropological contributions have been applied to influence gerontology, or adapted and applied by gerontologists meaningfully.…”